Nadia and Dennis are two young people that were diagnosed with Crohn's colitis and ulcerative colitis respectively several years ago. They both had their colons removed, lived with an ostomy, and now both live with fully-functioning J-pouches! They each started making videos to tell their stories to others who are going through these diseases. This year, they teamed up and created the United Colon Vlog, and have so far had lots of success with outreach and raising awareness!
Tuesday, April 27, 2010
Take Steps Home Video Contest Winner!
To kick things up a notch and to encourage our teams to tell us how they REALLY feel about participating in the Take Steps walk, we had a contest this year to see which team could make the best team video! Our winning team was Team UCVlog with an amazing, and inspiring video! Check it out below!
Nadia and Dennis are two young people that were diagnosed with Crohn's colitis and ulcerative colitis respectively several years ago. They both had their colons removed, lived with an ostomy, and now both live with fully-functioning J-pouches! They each started making videos to tell their stories to others who are going through these diseases. This year, they teamed up and created the United Colon Vlog, and have so far had lots of success with outreach and raising awareness!
Nadia and Dennis are two young people that were diagnosed with Crohn's colitis and ulcerative colitis respectively several years ago. They both had their colons removed, lived with an ostomy, and now both live with fully-functioning J-pouches! They each started making videos to tell their stories to others who are going through these diseases. This year, they teamed up and created the United Colon Vlog, and have so far had lots of success with outreach and raising awareness!
This year, Nadia and Dennis decided to start a Take Steps team to raise money for research and to give back to their Crohn's and Colitis community, since they have experienced dramatic improvements in health since their surgeries.
"We hope that one day a cure can be found, since we know how terrible these diseases can get. We are confident that in our long lives ahead of us, some great progress will be made!"
~Nadia and Dennis and Team UCVlog!
Friday, April 23, 2010
Brother and Sister Take Steps together to Fight Crohn's disease!
Laurel and Zach are your typical brother and sister. Laurel is the older sister who drives her brother around with her driver's license. They go to the same school, same summer camp, and share pets, friends, and hobbies. Laurel and Zach also share something different than the typical brother and sister duo. They both have Crohn's disease.
According to Laurel, living with Crohn’s disease is something that really brings them together because it is something that they are both going through. "We can talk to each other whenever we have problems and it is really nice to have someone to confide in who is going through the same things."
Here is another twist to their story. Not only do they both suffer from Crohn’s disease, but their dad is also a Gastroenterologist. Talk about a family who knows their IBD!
Laurel and Zach attend a yearly summer camp, Camp Oasis, for children living with Crohn's disease and ulcerative colitis. They both have made so many close friends over the years that have IBD. They are both very passionate about raising money because the research that their fundraising supports directly affects their quality of life.
According to Laurel, "I see what my friends and I go through on a daily basis and I just want to make it better for the next generation."
Also just like any brother and sister, Zach and Laurel definitely like to compete against one another! This is why they each formed a fundraising team for the Take Steps walk in Minneapolis on May 23! Zach's Team and Project CURE are their competing teams with goals of $500 each! While this competition is fun, at the end of the day they are still fighting for the same cause.
Project CURE is a nonprofit fundraising group Laurel created by selling bracelets to raise money for CCFA's Camp Oasis. So far, through Project CURE, Laurel has raised over $7,000. Camp Oasis is so important to Laurel and Zach, and they want everyone who lives with Crohn's or Colitis to have the opportunity to attend camp. Meeting other kids who take the same meds, have the same problems, and aren't embarassed to talk about it is so important for kid's with Crohn's and Colitis.
Laurel and Zach hope you can join them May 23, at Lake Nokomis in Minneapolis to fundraise for Crohn's and Colitis research!
Saturday, April 10, 2010
300 person challenge!
Ready or not, the Rochester, Twin Cities and Sioux Falls walks are almost here! If you haven't already registered your walk team - it is time to get the ball rolling! Check out our top teams at each walk site:
Twin Cities Largest Team: Team Mahmud - 21 Team Members!
Rochester Top Fundraising Team: The Clean-out Crew: $2,245 so far!
Rochester Largest Team: - The Clean-Out Crew - 11 team members!
Sioux Falls Top Fundraising Team: Stephanie's Crohnies: $385 so far!
Sioux Falls Largest Team: Stephanie's Crohnies" 7 team members!
As you can see, these walks are doing awesome. But we still need more people signed up! That is why the week of April 12 - 16 will be our "300 - person challenge" week. Between all three walk sites, our goal is to get 300 people signed up to walk this week!
Let the registering begin!
Monday, March 8, 2010
CCFA Spirit Week
Be Heard and Spread the Word for CCFA Spirit Week
We’ve got spirit, yes we do, we’ve got spirit, how ‘bout YOU?
This week through March 12, our chapter will be celebrating “Be Heard and Spread the Word for CCFA Spirit Week”. During this Spirit Week, we hope to increase community support and awareness of IBD and ensure we have lots of people joining us on walk day!
As an individual, you can do just three things quite easily this week to spread the awareness to at least 100 people (even if you don't know all of them!).
- Remind yourself why you are involved with Take Steps. Are you walking for yourself or someone you care about?
- Give yourself about 10 minutes (maybe over a nice bowl of Cheerios) to add pictures and a personal message to your Take Steps webpage so that your donors and fellow walkers can see why CCFA's mission is so important to you! Check out my personal page as an example.
- Send an e-mail to your personal and/or work address book including a link to your personal page. Ask each of your contacts to not only join or support your team, but to pass the message along to five of their contacts. They can do this by forwarding your e-mail, by posting it to their Facebook account, by tweeting or even blogging about it.
In fact, the person who sends out the most emails by this Friday, March 12, will be the star of next week's blog! So don't wait! Show your spirit today!
Friday, March 5, 2010
"Walk" in the Name of Love!
Ok, so I know it isn't Valentines Day anymore. But this post isn't about mushy, romantic stuff. This post is about two wives who quite literally, walk in the name of love.

My husband's name is Cal and he was diagnosed with ulcerative colitis in 2001. After a few years of sickness and a colectomy, the doctors then correctly diagnosed him with Crohn's disease. This was before I married him, before I loved him, even before I knew him. So, when I came into the picture, inflammatory bowel disease and my husband already had a long relationship - one in which I did not know what role to play.
Cal never liked to make a big deal out of his Crohn's - he still doesn't. Cal knows this is something God will use to touch others. He realizes that God has bigger plans for his life and therefore lives each day knowing there is a greater purpose. We have been in and out of the ER multiple times, with me staying beside him, praying for him, sick inside from not knowing how to help him. My natural instincts to want to "make it all better" were going to have to change.
Cal and I - we don't have a cure for Crohn's. But we do have a strength together because of our faith.
Our team name is "Overcome" because Cal went from being a totally health person in college to given two weeks from death. Cal had a complete colectomy, got back on his feet, and today is a personal fitness trainer. Now every time he is given a tough circumstance in life, he has the attitude of overcoming it. And Cal has taught me that to help him get through the tough days, I need to be right next to him fighting Crohn's and not letting it beat us.
So, that is why I am walking this May. Cal and I have to "overcome" this disease so that others can look to us and know that life not only moves on, but can be wonderful!

Jen
My husband Brandon has Crohn's disease. When he has flare-ups or medication issues, it is really hard for me to be an outsider who worries and hopes that everything will get better. I love Brandon and I cannot sit and watch what twists and turns his disease will take.
Take Steps allows me the opportunity to actively participate in making Brandon's life better. I understand that research is vital to finding a cure and better medicines for him, and I am happy to be able to not only throw myself into the cause, but to draw in support from friends and family as well. Last year our friends and family helped me raise over $2,000. I did this in Brandon's name last year, and am very happy to be able to do it again this year!
Watching someone you love struggle with a disease is never easy. Brandon has battled Crohn's disease for twelve years. As his wife and someone who does not personally have to fight Crohn's, like Brandon, I am able to combat the disease from different angles, such as funding research, and raising awareness. Drawing on Brandon's courage helps me to provide complimentary strengths that ease the overall burden of his disease.
Last year was our second year walking in Take Steps and fourth year donating. I hope that all of you who have a loved one with Crohn's or Colitis will take an active role in trying to find a cure. What better way to do it than by gathering your friends and family and joining together to walk this May?
Aja, Team Overcome
My husband's name is Cal and he was diagnosed with ulcerative colitis in 2001. After a few years of sickness and a colectomy, the doctors then correctly diagnosed him with Crohn's disease. This was before I married him, before I loved him, even before I knew him. So, when I came into the picture, inflammatory bowel disease and my husband already had a long relationship - one in which I did not know what role to play.
Cal never liked to make a big deal out of his Crohn's - he still doesn't. Cal knows this is something God will use to touch others. He realizes that God has bigger plans for his life and therefore lives each day knowing there is a greater purpose. We have been in and out of the ER multiple times, with me staying beside him, praying for him, sick inside from not knowing how to help him. My natural instincts to want to "make it all better" were going to have to change.
Cal and I - we don't have a cure for Crohn's. But we do have a strength together because of our faith.
Our team name is "Overcome" because Cal went from being a totally health person in college to given two weeks from death. Cal had a complete colectomy, got back on his feet, and today is a personal fitness trainer. Now every time he is given a tough circumstance in life, he has the attitude of overcoming it. And Cal has taught me that to help him get through the tough days, I need to be right next to him fighting Crohn's and not letting it beat us.
So, that is why I am walking this May. Cal and I have to "overcome" this disease so that others can look to us and know that life not only moves on, but can be wonderful!
Jen
My husband Brandon has Crohn's disease. When he has flare-ups or medication issues, it is really hard for me to be an outsider who worries and hopes that everything will get better. I love Brandon and I cannot sit and watch what twists and turns his disease will take.
Take Steps allows me the opportunity to actively participate in making Brandon's life better. I understand that research is vital to finding a cure and better medicines for him, and I am happy to be able to not only throw myself into the cause, but to draw in support from friends and family as well. Last year our friends and family helped me raise over $2,000. I did this in Brandon's name last year, and am very happy to be able to do it again this year!
Watching someone you love struggle with a disease is never easy. Brandon has battled Crohn's disease for twelve years. As his wife and someone who does not personally have to fight Crohn's, like Brandon, I am able to combat the disease from different angles, such as funding research, and raising awareness. Drawing on Brandon's courage helps me to provide complimentary strengths that ease the overall burden of his disease.
Last year was our second year walking in Take Steps and fourth year donating. I hope that all of you who have a loved one with Crohn's or Colitis will take an active role in trying to find a cure. What better way to do it than by gathering your friends and family and joining together to walk this May?
Monday, March 1, 2010
Loud and Proud!
Loud and Proud Club!
Every year, we encourage members of our Take Steps walk to be a part of our Loud and Proud Club. With all of the e-mails, phone calls, mailings, and events that we are all bombarded with every day, you might not even remember what this so called "club" even is. Let me introduce you to our Loud and Proud Club members from the 2009 walk, and I will explain what they did to get in, and what they got out of it!
2009 Loud and Proud Club Members
Cynthia Becker
Amanda Kanewischer
martin matsoff
Raphaela Cogan
Dayna Johnson
Madeline Matsoff
Olivia Matsoff
Jane Matsoff
Jeanette Lepore
Laura Loppnow
Marc Matsoff
Zoe Burton
Holly Brogaard
Marjorie Kostouros
Stephanie Campbell
Judy VanSlooten
Yan Kravchenko
Dawn Johnson
Mike Balint
Daniel Strumberger
Kasey Heimstead
PJ Ritters
Mary Dunnewold
Jessica Valentyn
Mindy Czycalla
Kara Nielsen
Jen Barkosky
Angela Sieber
Jennifer Schneider
Trudi Bellmore
Samuel Collette
Stacey Myhro
Tyler Jacobson
Nancy Sorjanen
Helen Matsoff
Loud and Proud Club members committed to raising a minimum of $1,000 for the walk last year. All by themselves! Several of these people fundraised on teams that raised a lot more than that!
Aside from a big pat on the back, being a Loud and Proud Club member has its advantages. The day of the walk, L & P members receive a nice drawstring bag to carry all of their goodies in. Also, L & P club members are also given a VIP pass to a chair massage station compliments of Advanced Chiropractic and Massage.
So... if you are thinking about fundraising, AND you love chair massages and free goodies - let's talk about you becoming the newest member of our L & P club.
~Maggie Mau, Loud and Proud Club Member
Every year, we encourage members of our Take Steps walk to be a part of our Loud and Proud Club. With all of the e-mails, phone calls, mailings, and events that we are all bombarded with every day, you might not even remember what this so called "club" even is. Let me introduce you to our Loud and Proud Club members from the 2009 walk, and I will explain what they did to get in, and what they got out of it!
2009 Loud and Proud Club Members
Cynthia Becker
Amanda Kanewischer
martin matsoff
Raphaela Cogan
Dayna Johnson
Madeline Matsoff
Olivia Matsoff
Jane Matsoff
Jeanette Lepore
Laura Loppnow
Marc Matsoff
Zoe Burton
Holly Brogaard
Marjorie Kostouros
Stephanie Campbell
Judy VanSlooten
Yan Kravchenko
Dawn Johnson
Mike Balint
Daniel Strumberger
Kasey Heimstead
PJ Ritters
Mary Dunnewold
Jessica Valentyn
Mindy Czycalla
Kara Nielsen
Jen Barkosky
Angela Sieber
Jennifer Schneider
Trudi Bellmore
Samuel Collette
Stacey Myhro
Tyler Jacobson
Nancy Sorjanen
Helen Matsoff
Loud and Proud Club members committed to raising a minimum of $1,000 for the walk last year. All by themselves! Several of these people fundraised on teams that raised a lot more than that!
Aside from a big pat on the back, being a Loud and Proud Club member has its advantages. The day of the walk, L & P members receive a nice drawstring bag to carry all of their goodies in. Also, L & P club members are also given a VIP pass to a chair massage station compliments of Advanced Chiropractic and Massage.
So... if you are thinking about fundraising, AND you love chair massages and free goodies - let's talk about you becoming the newest member of our L & P club.
~Maggie Mau, Loud and Proud Club Member
Thursday, February 25, 2010
I am Taking my Life Back!: Episode 2
Linda's Story
After living with Crohn's disease for 25 years my GI doctor in Michigan suggested I begin a support group. Little did I know that starting a CCFA Chapter in Lansing would benefit me as well as the patients who attended. I believe that we need support from others to live with a chronic illness but we must educate as well. I held monthly meetings for patients and their families and provided lists of recommended reading, showed videos, and talked about my own experience. When I contacted the newspaper and TV stations they told me that they would give me PR when I had a fundraiser to promote. I then realized that the best way to get the word out about Crohn's and Colitis is to hold fundraisers.
Because I was a committee of just me, I did it all. I wrote to tons of famous people and received all kinds of amazing items for the silent auction. The biggest items I received were 2 round-trip tickets from an airline. The woman at the airline called to tell me that they receive 2,000 letters a month and out of those, they picked mine. With these items, I held a bowl-a-thon/silent auction and raised several thousand dollars.
I also was able to show my appreciation for my GI of 20 years by naming him Physician of the Year. I had a movie gala (which they do a lot of in Michigan). His colleagues and family came, I presented him with a plaque which my daughter gave to him, we had food donated and everyone was given movie passes to see the movie of their choice. I asked everyone for donations to be included in the program we passed out - my dentist, insurance carrier, friends, relatives, everyone. Raised quite a bit for that event too which was satisfying.
In order to raise awareness about Crohn's disease, we must reach out to those with the disease as well as to the public to educate them on this illness. I'm having a set back now and am back on steroids which prompts me to work even harder for this walk and to make the people of Rochester aware of what the CCFA is doing to help us. I hope you will join me on May 16 at East Silver Lake Park in Rochester by registering today to raise awareness and funds to keep the mission of CCFA going in our own community!
The video below was posted on the Mayo Clinic's blog. Click on the link to read the whole story!
From Mayo blog: http://sharing.mayoclinic.org/2009/09/10/becoming-an-employee-after-35-years-as-a-mayo-patient/
~Linda , Rochester Take Steps 2010
Tuesday, February 23, 2010
Strength in Numbers!
Do you often feel like you won't be able to make a significant difference by yourself when it comes to finding a cure for Crohn's and Colitis? I know it is easy to think that the effort a single person can put in won't make much of an impact. However, when we all work together, it becomes much easier to make ourselves and our cause stand out.
The saying goes that wo heads are better than one. How about five, ten, or 1,000 heads? When it comes to the Take Steps walk, we encourage our participants to form teams of their frends, their family, their co-workers - anyone they can think of. Check out the following Flash Mob video to see how a large group acting towards one goal can make the people around them take a time-out during their busy lives to pause and take notice:
Two of our teams in the Twin Cities understand that "size matters" and have worked on building up large teams of family and friends to help extend the reach of our mission of finding a cure. Meet team "Semi-Colons" and "Team Valentyn!"
Lindsay Wright is the captain of team "Semi-Colons" which is made up mostly of campers and other counselors from CCFA's annual summer camp for kids with IBD: Camp Oasis. Lindsay's team already has 14 members and the walk is still over three months away! Lindsay has had Crohn's disease for over 12 years, and so she understands that there are often many obstacles and negatives in the lives of those suffering from IBD. However, she also knows that there is the potential for great strength among those who are fighting a common battle. She has used this, and has turned it into something positive for her team members. She uses the Take Steps team format to instill a positive competition between her team mates. "If you are walking by yourself, there is no one to push you to reach higher" Lindsay said. The final point Lindsay made was that one voice can be very soft, but many voices can force others to stop and take notice, as you saw in the video above.
Jessica was diagnosed in 2005 with Crohn's disease. Last year, Jessica walked with 7 team members and they raised over $2,000! Jessica employed the "phone tree" tactic of recruiting team members and spreading the word about the walk and her fundraising. For every person she asked, she asked them to ask ten other people to join them or to donate to them! Having a louder voice through her supportive team is so important to Jessica because she knows that a lot of people do not understand IBD. She knows that educating others is the ONLY way to raise enough awareness and funds to find a cure.
IBD can be an isolating disease, especially when others don't "get it." Can you think of a better remedy than gathering thousands of people to fight together?
~Lindsay, Semi Colons and Jessica, Team Valentyn
Thursday, February 18, 2010
I am Taking my Life Back! Episode 1
Crohn's is different for everyone affected by it, but for me, I have been in and out of flares for almost 8 years now! That means that almost a quarter of my life so far has been spent not feeling well, and sometimes, feeling downright awful.
I am not a doctor or a scientist, but I knew I had to do something. Anything to feel in control of my health again.
Last year I joined the Take Steps walk for the first year and raised over $1,000! Suddenly I realized what frustration and passion for a cause could do: get results. Now, I am openly talking about my Crohn's disease and how important it is to find a cure. I know I am making a difference not only in the lives of others with IBD, but in my own life.
My name is Holly. I am an artist, I have wonderful, supportive friends and family, and I have Crohn's disease. But I am a fighter - and the war isn't over yet.
~Holly, Team Poo on You Crohn's!
Tuesday, February 16, 2010
Procrastination: A love/hate relationship
If you are anything like me, you don't have any time to spare during your daily life. However, I bet, also like me, you have time to watch a two-minute YouTube cat video.
Time is a funny thing. It is easily found when browsing YouTube or finding old friends on Facebook, but is often impossible to find when settling down to take care of business.
I was chatting with a Take Steps team captain about this the other day. She was fretting about how she hadn't sent a lot of her e-mails yet asking for support. I told her not to worry - that she had plenty of time. Can you believe it?! Me! The Take Steps Manager, let procrastination in!
She responded to my carefree attitude by telling me that the earlier she starts, the more she feels like she can enjoy the process of informing her friends and family about this cause that really is truly important to her. Waiting till the last minute only undermines the significance that this event really has in her life.
So...I am going to challenge myself to take 5 minutes this week and upload my e-mail address book into my Take Steps personal page. Then, I am going to send out my initial e-mail to my friends and family, asking them to support/join me the day of the walk.
Then, I am going to clean my house and vacuum my car.
Well...maybe not the last part. But procrastination will not beat me this week.
~Maggie Mau, Team Mau
Thursday, February 11, 2010
Faces of IBD
Chances are you know someone with Crohn's or Colitis. You yourself may live with one of these diseases. So how come more people don't know about them?
One of the reasons is because people with chronic, painful diseases typically have to learn to accept a new "normal" when it comes to feeling well, and live their every day lives as best as they can.
Adam is 13 years old and was diagnosed with Crohn's disease two years ago. This picture is of Adam swimming and maintaining an active lifestyle. Adam tries his hardest not to make Crohn's a "big deal" in his every day life. His Take Steps team, Adam's Challenge, literally emphasizes his view on his disease - as a challenge for him to overcome! And overcome it he will - by living life fully and fundraising for a cure!
This week we are going to honor some of our "Faces of IBD." These are people who take part in our Take Steps walk who are proud to live full, active lives, despite their battles with Crohn's and Colitis. Here are their stories:
Adam's Story
Adam is 13 years old and was diagnosed with Crohn's disease two years ago. This picture is of Adam swimming and maintaining an active lifestyle. Adam tries his hardest not to make Crohn's a "big deal" in his every day life. His Take Steps team, Adam's Challenge, literally emphasizes his view on his disease - as a challenge for him to overcome! And overcome it he will - by living life fully and fundraising for a cure!Mylissa's Story
Monday, February 8, 2010
Minnesota v. Crohn's & Colitis
I talk to a lot of people every day whose lives are drastically affected by Crohn's disease or ulcerative colitis. Whether it is themselves, their parents, their sons, their daughters, or their friends, everyone generally feels the same way about IBD: that they have to do SOMETHING.
The first and easiest thing that all of us IBD-fighters can do is to to raise a little bit of much-needed awareness about these diseases in our own neighborhoods and cities. If you live anywhere near the Twin Cities or Rochester, there are two annual walks in May 2010 where you can take the opportunity to stop saying "I've been meaning to get involved" and start informing the people around you about how badly we need a cure.
Check out the video Jeff Passolt, a Twin Cities Fox 9 news anchor, made for us at the Crohn's and Colitis Foundation:
If you are serious about finding a cure and making Crohn's and Colitis household names, you need to act locally. Signing up to walk is easy and important. And fun. Just ask team "Pooper Troopers" or team "Plumbing Problems."
There: that's my pitch. From now on my posts will consist of real-life stories of real-life people who are raising awareness in Minnesota to find a cure for Crohn's & Colitis. And about how they LOVE doing it.
~Maggie Mau , Team Mau
Take Steps Twin Cities
Subscribe to:
Comments (Atom)

